DON'T BE FOOLED!!!! If you look closely at Sadie's left cheek you'll see the bite marks of a NOT so innocent and/or sweet 2 1/2 year old. Don't get me wrong. They're both cute and all, but boy do they have their moments!!!!!! And Chloe lately, well, not just lately, but for what seems like forever has been into EVERYTHING. And I mean EVERYTHING. And not just into it all but ON it all. She's been climbing since before she could walk and now her favorite places to be are on top of things, like the kitchen and dining room tables or the piano. . . I'm getting to my wits end and don't know if there is a light at the end of the tunnel or if this is just how Chloe's going to be. A wild girl. When it comes to child development, I consider myself fairly savvy. I get how it works and for the most part hang on to the old saying "this too shall pass". But with Chloe I've been waiting and waiting and it ain't passin'! I know I WANTED her to walk and climb, but REALLY??? On everything??? This girls got no safety awareness. She would dangle from the kitchen light fixture if I let her stand on the table long enough (yes, I said "STAND on the table"). Like lightening she pushes the chair over, climbs up on the table and quickly stands up, sometimes rocking the table gently back and forth, just to see if she can actually give me a heart attack before I can reach her. I know she's trying to kill me. One way or other, she's trying to do me in. And she's gotten pretty close a few times. So if anyone has any encouraging words of advice, please let me know. We have baby proofed a big part of the house, we just can't seem to get the kitchen to be a safe place, so we tend to stay out of there. But I'm tired and need some assemblance of hope that this WILL pass or that I'll find the strength and wisdom to beat her at her own game. ;)

Wednesday, April 27, 2011

We've been busy, just like I said. Appointment after appointment this week. But so far, so good. As already reported she ROCKED her cardiology (heart) appointment. Yesterday after her morning physical therapy (in the mud outside, which she LOVED) we headed to the eye doc. I won't even get into the HOURS of waiting that we did just to be seen for MAYBE a total of 20 minutes (okay, well, I guess I DID get into it a little bit), anyway, the short of it is she continues to look pretty good ("look" haa haa, sorry, no pun intended). There doesn't appear to be any strabismis present (turning in), other than some mild turning in when she looks down. But that turn doesn't "qualify" as strabismis because it's too minor. So at this point, we'll go back in 2 months and just continue to monitor it. I do see her right eye turn in occasionally, but hopefully that's nothing. The bottom line of the appointment was that her eyes look good and we're still in a wait and watch pattern, while she continues to "heal" from surgery.

This morning was the BIG transition meeting (((drum roll)))! The one that talks about my baby not being a baby anymore. I know, that sounds dramatic, and really I'm not too wound up about it. She's my third, so the thought of her going off to preschool just seems so natural. And I'm an Early Intervention teacher so I know that the teachers and therapists will get to know her and love her and provide her with a developmentally appropriate, stimulating, safe and fun environment. And she's going to LOVE it. She LOVES playing with other kids and just playing in general, so I know she's just going to eat up the opportunity to engage with others, and soak up the beneficial aspects that a good preschool program has to offer. So I guess the biggest question for me is "is it a good preschool program"???? I've heard it's great, but I have pretty high standards, coming from being in the field, so I hope it meets my own personal and professional criteria! I think (THINK) it will. Let's hope! So anyway, I'm rambling, but the gest of the meeting was that she'll come in for a morning of observation where she'll get to play with the kids in the classroom (and I'll get to observe the classroom too) and then I'll come in alone another time and participate in the Vineland assessment interview and then we'll meet again in June to make the determination of what is to come for her programming. Today was more a planning for the meeting in June. They said she will automatically qualify for services because she has a developmental diagnosis, so now it's just a matter of figuring out what her services should specifically look like. Fun fun. But so far, so good.

Finally we're in the process of tweeking her home Birth to Three plan. It's so frustrating to me because it seems like they're always trying to cut back on services from her and she's just flourising! To ME I see her flourishing at least in part DUE TO all the services she's being offered, so cutting them seems counter-intuitive to me. And she's only got 3 months left, so I don't understand why they would want to cut them now. Her PT suggested she go down to 2/ce month from once a week, but she's NOT where other 2 1/2 year olds are! She's still a newer, somewhat unbalanced walker. She can't go up or down stairs on her feet. In fact, she can barely manage a step on her own. FORGET about running or jumping or walking down bus stairs. I mean, does this really sound like a 2 1/2 year old who should cut back on her services??? I'm stumped. So I guess as we re-write her plan I have to figure out what it is I think she really needs and fight for it. Fortunately, my mom said she'd help. I think it's time for some back-up.

Well, I think that about covers everything. PHEW! If you've read this far pat yourself on the back! ;)

Monday, April 25, 2011

After being there for what seemed like FOREVER because there was a "spot" on her echo (turns out it's something that's always been there and hasn't changed at all over the last year, but a new tech made note of it, so the cardiologist had to review the echo more closely) we got the great news that Chloe continues to ROCK her repaired heart. She still has moderate valve regurge so she'll continue on daily meds, but as expected we can switch to 2ce a day (from 3x per day). It's still a compound (meaning we have to drive 30 minutes to get it filled), but we're going to look into mail order. Hopefully we'll get it all worked out. If not, whatever. We'll just have to go to our old town once a month ;) It's worth it.

Well, this week is busy with appointments and meetings. We have her annual cardiology check-up today, which I fully expect to be routine. She does have a cough, but no fever and does tire sometimes when drinking a bottle (yes, she still takes a bottle), but I don't think it's heart related. I'm expecting a good report from her echo, a change in medication so we don't have to drive 30 minutes once a month to pic up a compounded medication and a change in dosing from 3x/day to 2x/day. So fingers crossed that I'm on the right track. She also has her follow-up eye doc appointment tomorrow, which I also expect to be routine. Just a check-in. Then Wednesday morning is the BIG transition meeting from Early Intervention to Preschool. I'm nervous, but excited. I'm think I'm ready for her to be in preschool. It'll be a good transition for her. She can use the additional stimulation with peers (aside from just her older siblings) and I think the structure will do her good. In addition to all that, her usual therapy! It's going to be a busy week (oh, and throw in baseball practice, 2 games, Opening Day ceremonies, a mammogram (for ME! LOL) and a half day from school to boot!)

Wednesday, April 20, 2011

Well, I thought for sure posting about how healthy everyone is would for sure jinx us, but everyone remains good! :) Horray! In fact, everyone is even in pretty good spirits, thanks in part to a visit with some friends today! And when everyone else is happy, that makes for a happy momma.

Here's a little video of Chloe playing with her brother. A) you can see what a wild girl she is and B) you'll now understand why she's so rough with her friends! Obviously I'm not helping matters, but she's just so darn cute with Xander I have a hard time resisting! Enjoy a little sunshine. . . (it helps to have the volume on so you can hear her laughing, but you might want to scroll to the bottom of the page and pause the music - but you can also watch it with the music playing)

Friday, April 15, 2011

Things have been quiet around here lately. I know, I should be careful what I say, but everyone's been pretty healthy and things have remained status quo. Chloe's had a slight cold and cough, but that just seems to be a constant now, so we're used to that. So no complaints and not much new to report.

Chloe's latest thing in the tub is putting her face in the water. We start swim lessons in a few weeks and I'm interested to see how she does. Hopefully she'll enjoy it.

Friday, April 8, 2011

Okay, well not a jet plane, but rather a train. And it's not me, but rather my first born. He's flown the coupe. Left home. Gone away. Yes, my son has left me. I know, I'm being dramatic, but this is the first time my son has gone off, on a train, for a weekend away from me. Don't get me wrong, we've spent many a night away from each other when Chloe was hospitalized frequently as an infant, and he is, afterall TEN years old, AND he IS with my mother, but I can't stop feeling anxious that he's in a different state, a 5-hour-train ride away, no less. I admit, I miss him already (he just left this morning). What am I going to do when he goes off on his own??? I recently saw various posts on Facebook about daughters being like sunshine (or some crap like that), but hey, sons are pretty rockin' too. :) Hope he has an awesome time. I love my Xander!

And a quick update on Chloe's hair drama. . . I've been putting a ponytail in and she usually keeps it in for a few hours at a time before ripping it out. I'm trying to consistently put it back in so maybe she'll just get sick of pulling it out.

Other than that, things are good. Chloe's got a cold with a cough, but it's not a major thing. Here's hoping it stays that way.

Wednesday, April 6, 2011

Chloe got ahead of me this morning and started down the stairs backwards. She's actually quite good at it, but this morning she was wearing this (adorable) skirt and got her feet caught up in it and before you know it, she was falling, backwards, head over heals, all the way down the long staircase! She was only about 2 steps from the top so it was a long, dramatic fall to the bottom!!! But all in all, she fell pretty "well", not hurting herself, but really only scaring herself. I ran to her side and comforted both her and Sadie who had watched helplessly from the top too. "I almost cried when she cried mom!" It was scary for all of us! Thank goodness for a thick carpet padding on the stairs. I think that really saved us! And all this after taking a face plant off the couch last night! I swear, I keep a close eye on her, but she's always on the go-go. She's one tough cookie!

Monday, April 4, 2011

So we got out and enjoyed some sunshine yesterday. If you look closely at Chloe's face you can see just how much she enjoys being outside. And now that she's walking I don't mind taking her out so much!!! Xander loves to go out and play lacrosse or baseball and Sadie just loves to run around! Gotta love spring time and the chance for more fresh air!

Friday, April 1, 2011

Cooking with Sadie. . . My BIG kids, Sadie and Xander! Enjoying Grandma Linda's goulash, made by daddy. YUM!!! Remember that girl with the g-tube who wouldn't eat???? For all our friends out there with Ds kiddos on g-tubes, it WILL come! Look what you have to look forward to! ;) Time for a goodnight story with big brother Xander. . .

Pray for Dillon

About Me

I am a 44-year-old woman whose life changed when I learned my third child would be born with Down syndrome. Right away I knew that our lives would be changed forever, I just never in my wildest dreams could have imagined it would be like this. This is my family's story.
In the months preceding the start of this blog, starting when Chloe was just 6 days old, she had 7 hospitalizations, 1 open-heart surgery, and 1 g-tube surgery. She was the youngest child at our hospital to ever be put on CPAP at home for Severe Obstructive Sleep Apnea. She had a TINY opening to her airway and therefore frequently suffered from upper respiratory incidents. Chloe also had GERD and was being considered for a Nissen Fundoplication. But she is an AMAZING fighter and the happiest girlI've ever known!